On Autism, Somalis Feel the Chill in Minnesota
Age of Autism Birthday Winners!

Listen Live Friday to the Federal Plan for Autism Research

UrgentPerhaps the most important meeting of the Interagency Autism Coordinating Committee HERE will take place in Washington on Friday, November 21 from 9am - 4pm.  Six of its 18 members HERE represent the community.  You can attend in person or listen live on 888-455-2920 (access code 3857872) and watch the powerpoint slides via a webinar (registration required HERE). 

Location and registration information information can be found HERE.  The morning session will be devoted to a discussion of the strategic plan for autism research required by the Combating Autism Act, basically the plan for how to spend about $645 million over the next three-five years.  Public input was requested last January, summaries can be read HERE

Further comment was requested on the draft plan can be found here HERE.  The plan HERE lists 35 research initiatives but is terribly deficient in treatment and cause research, and in setting forth top-level doctrine to guide the research, e.g. that ASD demands a crisis-level response to an epidemic-driven national health emergency. Eleven national research organizations in the community sent a letter last week HERE insisting on improvements.  The latest draft includes some of these suggestions plus alternatives to be discussed at the meeting.  Safeminds submitted further text amendments earlier this week.  The afternoon session will include a briefing on services and supports.  This is an extremely important meeting, with your tax dollars at the future of vital research at stake.



I think Lyn Redwood is one of the best autism advocates ever. She is always a class act and so very intelligent. I'm glad she is on our side.

Media Scholar

I think it's important to NOT get carried away with the "national crisis" phrasing.

There's a nex-gen SSRI waiting for HHS to give them the crisis they need for liability-free Autism "countermeasure" experimentation.

SSRIs are typically suicide-inducing drugs. Pharma is batting 1.000 for school shooters on SSRIs.


Tanners Dad

I am glad I did this once in my life. It is really emotionally draining. It is sad that we still have such a long way to go in our fight. Thank you all for your kind comments.
Keep up the good fight.. Say a prayer for our children and the parents fighting for them.
Thank you AOA and Safe Minds.

Tanners Dad

Safe Minds is almost the last to speak. I hope we get a entire post on all she is talking about. I am in tears just thinking about how those Mainstream Doctors are just ignoring her testimony. 3:05 PM Central Time.

Tanners Dad

"Crisis level response is needed." "Epidemic denial cannot continue." Jim Moody 2:55 Central Time

Tanners Dad

New Autism Warriors Code: "When the lifeguard is not paying attention, I must Act."


This Karen Walker is awesome. I don't know how people could listen to this and then do nothing. I just don't understand.

I always enjoy a good Thomas Jefferson quote.

Tanners Dad

I wish I had a recording of the last parent. She told a very very emotional story about her son almost drowning. She task the group to task over marginalizing our position.

Tanners Dad

2:45 PM TACA and Age of Autism mentioned for them to reference!

Tanners Dad

Question to the service providers... What aspect you would want changed?

Training for staff... Help reduce turnover
Coordination...Easier access for parents
Finding Employers
Expectations and outcomes
"This is not acceptable" we are not funding
"Being on SSI means you are living on poverty"
Have and Have not society. "Most of adults with developmental dissabilities are not working"
Medicad officials: It is up to states to choose waiver programs "We are making a vast effort."

"Keep on doing the same thing... Definition of insanity." People with disabilities have waited long enough. Isolated, lonely, poor..

Hear the voice of frustration. 2:15 PM Central Time

Maurine Meleck

Bless you Tanner's Dad for having the stomach to listen to this. And bless Lyn Redwood for trying to deal with these criminals.

Tanners Dad

It is just embarrassing how far behind the curve Illinois is compared to some of the other states with active waiver programs.

They are now talking about lack of professionals who are out there to deal with the adult population. Why is that... If the Autism epidemic is just a shift in diagnosis then those professionals should be out there. Right? 1PM Central Time.

Tanners Dad

Cathy Pratt from the ASA gave a passionate talk on using our money for practical research. She she go on the wall of Heros. 12:45 PM Central Time.

Tanners Dad

Of course the last issue was watered down and glossed over. Lyn must be frustrated.

Now they are talking about RFI Request for Information. Lee Grossman Sub Chair.

137 responses
368 questions/issues raised
75 research topics
86 focused on Healthcare/Treatment (#1 topic)

Kelli Ann Davis


“These data as well as subsequent research indicate that the link between autism and vaccines is unsupported by the research literature” and Lyn is challenging it saying it’s not an accurate statement. She said she’d be more than happy to provide research studies that show there is a link.

Tom Insel just said “it’s a risk to go there” unless they go into discussing some of studies. There will always be “fundamental disagreement” on the studies, etc….

And I keep thinking….The fricking CAA (along with the colloquy and history) *DIRECTS* them to do this research *regardless* of what has already been done!!!

Tanners Dad

We have a new addition to the wall of shame...

Lawler, Cindy, Ph.D.
Scientific Program Director
Cellular, Organs and Systems Pathobiology Branch
Division of Extramural Research and Training
National Institute of Environmental Health Sciences
National Institutes of Health
Research Triangle Park, NC 27709

I am now to ill to type out some of her quotes.

Tanners Dad

"Vaccines have no place in this report" Dr Insel.In reference to some undeclared body or group asking for it not to be included. The establishment is doing everything to water the wording down. This is the place to set objectives. "I think this is a bullseye no matter what." Dr. Insel 11:43 AM Central time.

Tanners Dad

Lyn Redwood is a Godess. She is going head to head with the powers that be. She voiced how three of her submissions were not even presented for discussion. They are not talking about vaccines and sub-populations.
Lyn pulled out "Congress has asked for..."

"Rememeber this is the section on what we need" Vs what we need (did not get that last part word for word from Dr. Insel. (11:30 AM Central Time)

Now the establishment is doing their best to downplay the debate. There are other committee that are set up to address these issues. Dr. Insel three options original language, public comment language, or detailed comment. Let's Vote.
Dr.Insel "I don't want to spend the time..." The Chair is pushing to gloss over again... Lets put it in at another area.

back pedaling... Now the establishment is saying "Even though I voted for it..."

Tanners Dad

Poor Lyn. She just got slammed by Dr. Insel. He went off on studies that he is privi to that the public is not aware about how important heritability is. I think he may have tipped his hand to the next go round. They are going to introduce studies that say how ASD are injerited. "Can I suggest we move on." "the easiest thing is to vote on it" "Ok we will go back to the original language" These quotes from Dr. Insel. at 11:28 AM. Again Poor Lyn deleting all her/our additions.

Tanners Dad

Parental age more important than medical exposures. Dr Insel "Medical exposures... Someone explain.. thalidomide". 11:15 AM Central Time. I am sure this will be brushed under the carpet. "I was not sure what a medical exposure is..." List deleted at 11:20 AM.

Tanners Dad

I believe the Paula who is on the spectrum presented some great comments. I think it is sad that only one person on the spectrum is represented. I also think she made some fantastic points about services and considering ASDs long term effects. It seems the doctors want to focus everything on conception, genetics, to age 2 or 3.

Lunch break but the speaker is still on... We will let you know...11 AM Central Time


Thanks so much for the comments, Tanners Dad. Some of us don't have the stomach to listen to that committee.

Kelli Ann Davis -- Ethics Presentation is Next

"This maybe my own ignorance" "Is autism and allergy related" Comment by attendee..."

I almost flipped when I heard this as well!!! I believe the comment was by Jim Battey, Director of the National Institute on Deafness and Other Communication Disorders.

So let me get this right....one of autism's major deficit areas is *communication* and this guy has NEVER heard of the association between autism and allergies??

Tom Insel needed to explain that to him.


The *ethics* guest speaker is getting ready to speak. This otta be interesting....

Shauna- Together In Autism- www.togetherinautism.org

This is a platform for our voices to be heard, not just one loud voice, but thousands and thousands in our community. Way to go! Thank God for you guys getting it out there.

Together In Autism


Tanner's dad,

Thanks for the updates, please keep them coming.

Tanners Dad

Human and Animal studies just got cut. It seems that anything that the biomedical community would want gets cut. Anything that goes back to genetics get approved. We need more than six people from our community.

Tanners Dad

I am very very angry now... They are debating the number of research projects. 4, 10 or 25. The comment "Unless there is a good argument to have 10 or 20." So they revert back to 4 and blow off parents. I will give you thousands and thousands of good arguments to have more than 4 Scientifically Rigorous research projects. 10:20 AM Central Time.

Tanners Dad

I wish that $5 mil $10 mil and $40 million were numbers they were using with urgency towards specific treatments instead of biobanks. 10:15 AM Central Time

Tanners Dad

There is a a pattern emerging. Let's delete these now... we will add it later. When they get to the later they say... Didn't we talk about this earlier. Section 1, 2 or 4.... I am suggesting we add it but lets decide where...

"We may deal with it later..." You go Dr. Chairman

Tanners Dad

"This maybe my own ignorance" "Is autism and allergy related" Comment by attendee... That is why we are asking you to fund the studies. I wish I knew which PHD was saying these things. 9:55 AM Central Time

Tanners Dad

VICTORY... This line was added due to public comment (not sure of the exact wording it was on and off the screen very quickly): An Evaluation of differences of children with ASD and environmental exposures. Score one for the children. 9:45 AM Central Time.

Tanners Dad

Kind of scary how nice they are treating Lyn Redwood from Safeminds. You are doing a great job you can just feel the political influence the parents are now having on the proceeding. I just pray that it is not lip service. Fight for every word lyn. We do not have another 20 years to waste.

Tanners Dad

"who would have thought" one attendee talking about Nicotine and Lung cancer. How about using that with some of the issues surrounding autism. I am sorry I am getting a little cynical.

Tanners Dad

"first objective I hope nobody is listening on the phone line" ha ha ha "we could just throw it out the window". It is always interesting what is said when people on break and they forget the mic is still on.

Tanners Dad

Comment from one of the attendees "Hour and half on section one. Wow." then you hear laughter. I am amazed by the lack of urgency.

Tanners Dad

They just cut a addition to the plan 9:10 AM CT:

"Conductive active screening prevalence studied in a number of US locations and use a variety of sampling approaches of adults born before 1987 and compare with prevalence of teenagers after 1987 using the same diagnostic criteria and assess whether adult phenotypes differ from teenage phenotypes. Estimated cost $6,000,000"

Again with the stroke of a pen... We refuse to look at something that has been requested since 1982. Add another 10 years to the timeframe before the establishment joins the real world.

Tanners Dad

8:30 AM central time: They are debating the word "appear" going on 15 minutes. Now he just remembers that he should have people introduce themselves... I am not sure I can last too long listening and not being able to say anything. Now a vote to go back to the original... It reminds me of the old guys at Lions club debating the price of baked beans at the fish fry:)

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.


Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)